Wednesday 28th April 2021
A summary of the second evidence session held by the APPG. In this session, patient engagement experts and industry professional were invited to talk to the APPG about their experience of the heart valve disease pathway.
On Wednesday 14th April, members of the All-Party Parliamentary Group (APPG) on heart valve disease came together to hear oral evidence as part of the group’s review into the current standards of management and care for heart valve disease patients in the UK. The session was split into two sections, with evidence initially taken from patient advocacy group representatives, followed by stakeholders from the pharmaceutical and MedTech sectors. Alongside written evidence, these sessions will help to inform the APPG’s response to the ongoing consultation on a new NICE clinical guideline (Heart valve disease presenting in adults: investigation and management). Members of the APPG who took part in this session were:
- Steve McCabe MP (Chair)
- Baroness Masham of Ilton
- Virendra Sharma MP
- Jim Shannon MP
Professor Huon Gray (former National Clinical Director for Heart Disease at NHS England) acted as Co-Chair for this oral evidence session, in his capacity as Chair of the Heart Valve Voice Clinical Advisory Panel.
Section One – Patient Advocacy Groups
Following a short introduction from APPG Chair Steve McCabe MP, patient advocacy group representatives were invited to introduce themselves and the organisation they were representing. The stakeholders who attended the session were:
- Wil Woan, Chief Executive of Heart Valve Voice
- Neil Betteridge, Patient and Public Adviser for NHS England
- Martin Lock, Founder and Chief Executive, Silversurfers
The question and answer portion of the session then began, with Steve McCabe MP asking panellists about the assessment and diagnosis of the condition. Specifically, Steve asked if there novel ways of working that have been developed during the pandemic that should be continued in the future, such as telemedicine, COVID-free surgical pathways and rapid access to diagnostics. In response, the panel noted that this had been the case, with telemedicine in particular highlighted as an innovation that had been of real benefit to the patient community. However, the panel also agreed that telemedicine should not be exclusively used across the patient pathway as certain milestones such as a new or change in diagnosis, should occur via a face to face appointment where possible.
In addition, the importance of the patient voice in helping to shape new ways of working, and locking in examples of best practice was also stressed. During the early part of the COVID-19 pandemic, panellists explained how there was a significant reduction in the number of patients presenting in primary care, due to fears of contracting the virus. In order to help patients become more conformable with new ways of working (such as telemedicine), a virtual appointment guide was published by Heart Valve Voice, in partnership with relevant professional societies, which provided advice on how to best prepare and make the most of their appointment. In tandem, patient stories were published on the charity’s website alongside launching a #JustGo campaign to encourage patients to reach out and receive care in a timely fashion, as well as a symptom tracker app to enable patients to keep tabs on their symptoms over time and identify any new symptoms that may have developed.
In terms of innovative technology, digital stethoscopes were emphasised as a way to ensure that the NHS is able to diagnose patients promptly, but also reduce the burden on primary care by widening the number of healthcare professionals who are able to detect a heart murmur. This in turn will help to ensure patients are treated in a timely manner, which will also save the NHS more money in the long term as less patients will require expensive emergency care.
Furthermore, the panellists also agreed that more needed to be done to ensure that the over 50s (those at most risk from heart valve disease) receive the most accurate healthcare information possible. It was acknowledged that health is the number one concern for people in this age category but their willingness to use the internet to access information on conditions such as heart valve disease is often underestimated. Examples of Facebook live sessions with doctors that received a great deal of interest from the over 50s were highlighted as good examples of this, as well as broader interaction on social media by this demographic.
At this stage, Baroness Masham moved the conversation on to interventions for valve repair or replacement, asking witnesses for their views on when patients with heart valve disease should be seen in a specialist heart valve clinic, as well as the merits of introducing a national detection programme for the condition. In response, it was noted that a key priority should be for diagnosis and a pathway to intervention for patients when relevant, be established as soon as possible. Panellists noted that this was especially important in light of the UK’s ageing population, and once again noted that technology including digital stethoscopes can help to expedite the diagnosis and treatment timeline. As a result, patients will be able to recover sooner which will have positive knock-on implications for the economy and society as a whole.
Unfortunately, many opportunities to detect and treat heart valve disease are currently being missed and witnesses noted that more should be done to ensure patients are referred to a heart valve clinic as soon as possible to help improve their quality of life. The work of professional societies in developing disease-specific patient pathways was also praised, as well as how shared decision making can help to empower patients to take ownership of their treatment as they progress through the pathway. Unfortunately, it was also noted that in some places draft NICE guidance may not fully align to current European Society of Cardiology (ESC) guidance concerning patient choice within heart valve clinics.
On the topic of a national detection programme, it was explained how within the UK the rates of auscultation in primary care are significantly lower than in some European counties. For example, within France, 90% of over 65s have their heartbeat listened to on an annual basis, compared with only 10% of the corresponding age demographic in the UK. A national detection programme would therefore help to address this by ensuring heart murmurs are detected earlier, which in turn means referrals for echocardiography and treatment if needed would also occur more speedily than is currently the case.
Virendra Sharma MP then posed a question on the topic of information and support, asking what information, advice and educational materials could the NHS; charities and patient groups provide that would be useful to adults with HVD, their family and carers. Panellists explained that the NHS website is very comprehensive and contains a lot of vital information for patients. Adding more information to legitimate health sites was also encouraged as a way to prevent so called “google health” where patients search for their conditions or symptoms online and receive inaccurate information from non-trustworthy sites.
At this point, Virendra noted that while additional information is crucial, it needs to be accessible to the whole population, including those for whom English is not their first language. Panellists then described how community champions could be utilised to help ensure that this information reaches its intended audience as well as promoting increased usage of internet sources.
The need for a well-informed, confident patient population was also stressed as a way to deliver optimal care. Two types of patient information was then noted as being crucial to achieving this: information from healthcare professionals, and information from fellow patients on their lived experience with the condition. Heart Valve Voice was praised as being a useful source for both types of information, which helps to ensure that patients receive well rounded guidance, not only on their treatment options, but also on how heart valve disease can impact their everyday life. Ensuring that the information received by patients can be easily understood was also noted as being vital, as well as making sure that the right information can be accessed at the right time within the patient pathway. Overall, a consensus was formed that patients have a thirst for knowledge and it is the role of the NHS and charities to ensure that this multidisciplinary information is brought together for patients, their families and carers to utilise as they see fit.
At this stage, Steve McCabe MP thanked patient advocacy group representatives for their time and brought this section of the oral evidence session to a close.
Section Two - Pharmaceutical and MedTech Industry Representatives
Following a short break, the meeting reconvened with Steve McCabe MP inviting the pharmaceutical and MedTech industry representatives to introduce themselves and provide a brief overview of their role. The industry representatives who provided evidence before the APPG were:
- Ameer Alley, Edwards Lifesciences and Chair of the ABHI Heart Valve Disease Group
- Jane Nixon, Medtronic and Vice Chair of the ABHI Heart Valve Disease Group
- Barbara Harpham, Chair of the Medical Technology Group
Virendra Sharma MP subsequently began the question and answer portion of the session, asking witnesses about how innovative technologies can improve the heart valve disease pathway, and what the main barriers for adopting such technologies are. In response, it was explained that while innovation in the patient pathway is often used to refer to the introduction of products such as hand held echocardiography and digital stethoscopes, often the most impactful innovations are those to the pathway as a whole. For example, increasing access to timely diagnosis and speedy referral for echocardiography are innovations that would have significant benefits to patients, while utilising existing technology.
With regards to the barriers to uptake, the lack of awareness amongst the general public of heart valve disease symptoms was mentioned as a factor that prevents speedy diagnosis, as patients often do not equate breathlessness for example with the condition. This is especially important given the COVID-19 pandemic as patients are much more likely to be leading more of a sedentary lifestyle than in the past, given lockdown regulations. The need to recognise the symptoms of heart valve disease was also stressed as being vital for primary care clinicians too, so that knowledge regarding appropriate diagnostic testing can be enhanced.
The issue of training was also mentioned for clinicians and patients to ensure that both groups were aware of the various treatment options available, to help enable them to make informed decisions on care. Information sharing between cardiologists and surgeons was also noted as an area where improvements could be made so that the advice provided to patients is as informed as possible across the pathway.
Despite this, some witnesses were of the opinion that improvements to the heart valve disease pathway should focus on reforms to practice rather than broader innovation per se. For example, the NHS Long Term Plan (which mentions HVD) and the introduction of integrated care systems (ICS’) were praised as positive steps forward that would help to increase rates of community detection. As a next step, an idea was put forward for service reconfiguration by allowing pharmacists and nurse practitioners to undertake auscultations via digital stethoscopes to reduce the burden on overwhelmed GP practices. Owing to the pandemic, virtual or digital training sessions were suggested as a way to help support the role out of this innovation on a local trial basis initially, but then across the country if successful.
Following on from this, Baroness Masham then asked the group a question relating to interventions for valve repair or replacement. Specifically, she asked what can be done to improve and accelerate the treatment pathway? On this, witnesses expressed the view that the current system of appraisals for medical technologies needs to be reformed to allow for real-life demonstrations of products to be taken into consideration by regulators to increase the speed at which innovative technology can be approved. For heart valve disease, it was explained that a reformed system could allow for further technologies to be introduced to help treat the mitral and tricuspid valves. For mitral valve repair, it was explained that currently only three centres are able to carry out this treatment, even though there are at least seven that would also like to be able to do so.
On the topic of NICE guidance, disappointment was expressed that the draft guideline does not include sufficient mention of the importance of multidisciplinary teams in helping to advise patients regarding treatment decisions. These teams also have specific knowledge regarding what technology (surgical, TAVI, minimally invasive etc.) should be used to treat individual patients and therefore the lack of focus on this within the guidance is a cause for concern. Within this, other witnesses noted that clinicians need to be empowered to support and be trained on using innovative technologies as well as recommending these to patients, and expressed regret that sometimes the NHS can “stifle innovation”. In particular, greater utilisation of the Accelerated Access Collaborative (AAC) was suggested as a way to expand access to these technologies.
However, the lack of workforce supply was noted as a potential barrier to accelerating the treatment pathway as this could impact the NHS’ ability undertake the required interventions for an expanded patient pool in a timely manner. Upskilling other healthcare professionals to help relieve some of this pressure was again floated as a potential solution, with examples given of how pharmacists have been pivotal in increasing detection rates for atrial fibrillation (AF).
At this point, Steve McCabe MP then asked what could be done to ensure that policymakers such as NICE, NHS England and the government acknowledge these issues and pledge to accelerate improvements. The NICE guideline consultation response was put forward as the ideal opportunity to highlight this need, with witnesses noting that the COVID-19 pandemic has demonstrated that rapid innovation is able to be introduced into the healthcare system and that this can be used to drive momentum for improvements in the heart valve disease patient pathway. The pandemic has also highlighted inequalities in access to treatment across the country however, which has been caused by a mixture of capacity and commissioning issues across the patient pathway. To address this, a body to act as a check and balance on commissioners was suggested, which panellists hoped would increase access to innovation across the country and therefore reduce health inequalities.
Finally, Jim Shannon MP asked the group what information, advice and educational materials could the pharmaceutical and MedTech industries provide that would be useful to adults with HVD, their family and carers? Industry representatives explained that the first point of contact for heart valve disease disease patients is often their GP surgery, and so it was stressed that more high quality information needs to be provided in primary care settings. In addition, this information should also be uploaded to the internet and ideally contained within one place on a specialist heart valve disease website so that it is easily accessible and patients can have peace of mind that the information they receive is accurate.
With regards to what role the pharmaceutical and MedTech sectors could play specifically, witnesses stated that this should be a supporting role to enable charities and professional societies to continue to do what they do best in supporting patients such as via the drafting of patient information materials. In particular the work of the British Heart Foundation and Heart Valve Voice was praised, and it was noted that industry continues to have a great relationship with these charities.
As a broader step it was also suggested that a network of expert patients could be established to provide support to the newly diagnosed as they make their way through the patient pathway. These experts could then help to train the next generation and help to ensure that patients are able to pose questions to someone with the same lived experience, as well as having access to information online or at their GP surgery. Although witnesses were not certain on the exact process for rolling this out, it was agreed that patient experts would require full training and the scheme should be backed by a national institution such as NHS England.
Next Steps
The meeting closed with a recap of the main topics discussed from Steve McCabe MP, who reiterated that the APPG would continue to receive both written evidence from a wide range of stakeholders until the end of the week, to help inform the publication of a public report and the group’s response to the NICE guideline consultation. He then thanked all attendees for their time and brought the oral evidence session to a close.